Ankle Replacement and Subtalar Fusion Updates

As some of you may know, last January I had subtalar fusion in my right foot...this is after having a total ankle replacement in the same foot a year prior (Dec 2013). I also had total ankle replacement in my other foot prior to that (June 2013). To read about my ankle replacement journeys, please click here. Below are my updates...

A short summary of the Ankle Replacements...

Going into my ankle replacements, I was very hopeful. My surgeon told me that the replacement surgeries would take all the pain I was experiencing in my feet away. Did it? Well, not really. The best thing to come of the surgery is that my “bounce back time” has greatly improved. Meaning that if I overdue it today, I usually get a restart tomorrow. Before the surgery it would be days. And a couple times I overdid it so badly that it actually took several weeks...meaning that I either could barely walk on it, or, on better days, I was using a cane to get around. So that's the major pro of having the total ankle replacements.

The negative effect of the ankle replacement surgeries is that I can only stand or walk around for about 10-15 minutes before I'm completely done for the day. This is extremely frustrating and severely limits me.

Subtalar Fusion time...

Because I was so limited, I went ahead with the subtalar fusion in my right foot in January 2015. My surgeon said that I still have a lot of arthritis in the rest of the foot (really, both feet) and this may give me some relief. I wasn't as hopeful going into this surgery, but I was trying to remain optimistic. I knew it would be a much longer recovery time, but I also knew I could soldier through if it meant making a difference in my pain while walking/standing. The plan was that if this worked, I would get the left foot done after the right was was completely healed.

When I saw my surgeon last, in September, he told me that I needed to give the fusion a full year to heal before passing judgment. Well, in another week it will be a full year. This is my judgment...I've wasted the last year trying to rehab from the subtalar fusion and it is no better than before the surgery. If anything, it's more painful when I walk.

I've been putting this blog post off for a while now. I guess I was hoping that things would turn around and my ankle would suddenly start feeling better. I hate sounding so negative, but I need to be honest in hopes that it may help someone else.

Not every surgery is going to be a success for every person, and I know that with my SED it makes everything way more complicated than the average person. Up until this point, I've been very lucky with my surgeries. But the past three surgeries (both my ankle replacements and now the subtalar fusion) have been a let down for me, especially the last one. To think that I've wasted the past year is a hard pill to swallow and it depresses me whenever I think about it.

But, things could be worse. At least I have my feet. At least I can walk. I have a supportive family and a husband that is a superman for me. And my kids are 90% of the time, pretty awesome (they're teenagers, so that accounts for the other 10%!)  And I have this squooshy face to cheer me up... 

What does the future hold? I'm not sure. I know I won't be having subtalar fusion in my other foot, unless all of a sudden that foot starts to hurt worse than the other. I may have to look into a scooter sometime in my future (God help my local public!). 

Mostly, I'm hoping for a miracle breakthrough in medicine...where they can grow bone back and instead of giving you metal and plastic replacements, you'll get a new and improved bone instead. How cool would that be?

Pre-Op Medicine Protocol

After yesterday's post, I had a friend comment, “Happy Graduation!”...this was in reference to me having my last physical therapy session.  I just wanted to clear something up...it wasn't my last day of PT because I'm done rehabbing that ankle.  Hardly.  It's because I have to stop taking one of my everyday pain medicines.

Today is Tuesday, and is the last day I can take my Celebrex, which I take to control my arthritis pain.  Before you have surgery, you have to stop taking certain medicines, usually a week or two before surgery.  Sometimes your doc puts you on extra medicines as well...thankfully, this wasn't the case with my ankle surgeries (I had to do Lovenox injections before I had my knees done).  Every surgeon is different with their pre-op protocol.  My current surgeon has instructed me to stop all NSAIDS...Celebrex is in this family of drugs.  Also included is: ibuprofin, Alleve, and aspirin.  All these meds thin the blood...which is not good when someone is about to slice into you.  The last thing you want is to have to have a blood transfusion.  Been there, done that.  Don't want to do it again.

I am nervous about stopping my Celebrex again, as last time it not only caused me to be in a lot of pain, but also caused a smashing headache for about 3 days straight.  I've been taking Celebrex for 2 years now.  My prescription says that I can take one pill, 2x/day...but I only take one pill at night, unless I'm having an ultra bad day...then I'll take one in the morning as well.  I hate having to take medicine, so I try to take as little as possible.

Anyone else have a similar experience with coming off Celebrex or any other kind of everyday pain med?  Do you have any tips that have worked to ease the withdrawal symptoms?

Here's hoping that this time around the withdrawal symptoms are better...Geronimo!

Total Ankle Replacement #1 -- 5 Month Update

It's been a little over 5 months since my ankle #1 (left) total ankle replacement and I'm gearing up for going under the knife with ankle #2 (right) in a little over three weeks.  What does this tell you?  That having it done was worth it.  Worth it enough that I can't wait to get #2 done and rehabbed so I can have a bit of normalcy back in my life.  And by normalcy, I mean I can go grocery shopping without having to cancel all the rest of my plans for the week.

Range of Motion

My range of motion (ROM) isn't what I'd hoped it would be (I was hoping I would get to at least what I had).  I don't know what the numbers were before the surgery, but here are my newest measurements...

Ankle AROM Dorsiflexion: 5, P=20

Ankle AROM Plantarflexion: 35, P=55

Ankle AROM Eversion: 10, P=15

Ankle AROM Inversion 20 P=30

AROM means Active Range of Motion...how much I can move my foot on my own.  The “P” means passive...how much my therapist can torture it to :)  My therapist says that I'm still within the “normal” range for walking, but that I won't be a ballerina any time soon.  My Nutcracker dreams dashed!

"The Dancing Class" ~Degas

Activities

I started the treadmill at physical therapy just a couple weeks ago, and I think that has helped me experience less pain when I walk.  I wish I could workout more on the treadmill, but ankle #2 limits me as it is very susceptible to overuse.

Using my new ankle is getting easier...I can walk on it and stand on it longer with less recovery time.  I went to the grocery store just a few days ago and spent about 15-20 minutes in the store .  This was the second “real” outing I've had… the first was when I went to the craft store about 3 weeks ago.  The difference between the two outings is that I felt less sore this time than last, so that's progress.  I'm only using my aircast when I go out of the house...otherwise, I'm wearing my Birki's around the house for support.

Over the past month I've started doing a little more housework, including:

• laundry
• vacuuming for very short periods of time (my left hip will start hurting--probably due to my gait)
• hand washing dishes (our dishwasher broke about 6 weeks ago--great timing Murphy!)
• Cooking.  Well okay, I only cooked once...but I'm counting it as progress!

If you add all this to my two outings, I'm on my way to “normal”...well, my normal.

Overall, I feel like I'm much stronger than 3 months ago when I started PT, but I know I have a bit more to go.  I can now balance on #1 for several seconds.  This will be VERY important when I have #2 done, since I'll have to be non-weight bearing anywhere from 2-6 weeks, depending on if my bone fractures again during the surgery.  Being able to balance will be my biggest struggle for those first few weeks.

Anyone else have total ankle replacement?  Or other ankle surgery?  How long did it take for you to feel “normal”?  Would you do it again?

Facet Joint Injections and Why I Have Neck Problems

So, I've been having issues with my neck and back for a few years now.  Basically, I have arthritis in my neck joints, and muscle and nerve related problems in my neck due to a cervical fusion I had when I was younger.

Why did I have cervical fusion?  Well, when I was first diagnosed with SED at 15, the doctors took x-rays of my entire body and concentrated on my neck and spine since it's common to have spine related problems caused by my disease.  And I was a winner (go me!) with a little bone chip that was floating in my spinal column high up in the C1-C2 area.  Looking back, there were some signs that we should have recognized.  I remember as a child going on bumper cars and getting bumped a certain way and having my entire body go numb.  Not good.  I also did a gymnastics class once and was doing somersaults and had my body go numb there as well.

The doctors told me that I was very lucky (I would say it's a miracle) that I hadn't been paralyzed (they said I would have been paralyzed to the extent that Christopher Reeve was) and sent me home in a cervical collar and I had surgery scheduled for 3 weeks later.  I had a halo put on about a week before my fusion and was in that for over four months.  I missed half of my sophomore year in high school.

Skip to 20 years later and my fusion has “settled”...like how a new house will settle after a few years.  Mine has settled and gone crooked.  If you know anything about how bones and muscles work together, than you know that your muscles try to protect your bones...and mine were getting very angry with my neck bones being crooked!  I constantly get knots in my neck and suffer from tension headaches.   It had gotten so bad that about 7 years ago I went to a neuro doc to see what was wrong.  It was him that told me that it was very common to see these fusions settle and get crooked, and the best thing for me to do was try to keep the muscles loose.  He recommended physical therapy and acupuncture (it was only years later that I finally started acupuncture).  I went to physical therapy for a few months and was able to get the muscles to a calm enough level and continued on with therapeutic massage after that about every 6 weeks (would have went longer, except that's a total out of pocket cost). 

This kept things at bay until about 2 years ago when my symptoms worsened and I was now also having constant burning down the side of my neck that would radiate to the entire side of my head into my ear and side of my face.  I went to a whole slew of new doctors and was really terrified that they were going to tell me that I needed to have my fusion redone.  Thank God that wasn't the case (seriously--THANK YOU GOD. Thank you, thank you, thank you!).  I was diagnosed with occipital neuralgia and started getting injections into my greater and lesser occipital nerves.  After my ankle surgery 5 months ago, my neck was flaring up again.  The doc who was doing my injections moved away and the new doc who replaced him wanted to try some new things that would hopefully last longer than the occipital injections.  I tried an epidural shot about 3 weeks ago that was supposed to help my neck and my back pain (yeah, I have some back issues too).   Not only did that not help, it was pretty painful for a few days.

And that brings me to today.  I called my doctors office to beg them to see me earlier than the appointment that I had already lined up for the end of November...I didn't want anything to interfere with my ankle surgery coming up.  They said they could see me this afternoon.  Woot!  The procedure I had done is called facet joint injections.  It was a bit painful at times and lasted about 10-15 minutes.  Most of the time the pain was about a 3 out of 10, with the worst of the procedure being about a 6-7.  They said that I should be mostly numb for about 2-3 hours and then I should ice it.  Well, it's been about 1.5 hours and I'm starting to feel sore and I have a very slight eyeball headache.

I was nervous about the procedure, having the epidural shot only weeks before, but I held it together pretty well.  I had a friend drive me (thanks Joan!) and I was glad that she was there in the room with me because after the procedure was over, I felt very anxious and thought I may have a panic attack.  I don't like needles in my neck!!  After a few tears, and a strawberry kiwi juice box (I guess that's what they give their nervous patients), I did my 15 minute wait in the office before I was okay'd to be released into the wild.

Now it's a wait and see if this works.  Fingers crossed...good vibes and prayers welcomed!

Anyone else ever had these procedures done?  Have they worked for you?  If so, how long did you find relief for? 

Total Ankle Replacement...The sequel

I'm not quite 5 months out from my first ankle replacement, and yes...I'm going for the second one! Conflicted on how to react?  Yeah, join the club. I'm happy that #2 will be getting done so I can concentrate on recovery, recovery, recovery. But I'm also scared to have surgery...I'm always scared to have surgery...It's friggen surgery!  You know, where they rip open your body and cut and paste shit in and whatnot.  Not fun times usually.  But, #1 wasn't too bad.  The recovery has been slow, but the pain has been very manageable.

Oh, and I'm getting screwed again!  Happy Day!  The doc said that since my bone fractured in the left ankle while doing the surgery (I have soft bones apparently), he will put a screw in my right before he starts the rest of the procedure. This should lessen the probability of my bone cracking/fracturing. If the bone doesn't fracture, then I shouldn't have to be casted as long this time....which was the biggest setback for my recovery.

Why was being in a cast for so long a setback?  Because it's a looong time to be non-weight bearing on your foot.  Your muscles atrophy and it takes longer to build back your strength.   I was in a splint for 2 weeks...then a cast for another 4 (which turned into 5 because I couldn't get an earlier appointment)...then had to wait another week to see my physical therapist (again...couldn't get an appointment).

Total weeks of sitting on my ass doing nothing:  8 effin weeks.  6 more than “normal” people....which is why my therapist thinks I had a harder time of rehabbing.

This time going in to surgery will be better because I'm a bit stronger.  My right leg is stronger, from being the dominant leg for so long, and I'll be able to really push myself better in therapy because I won't have another ankle to baby.   I'm also going to be doing leg lifts in my cast to keep up the strength in my leg. And I can still do some of my core work (oh goodie).

In summary...Christmas should be fun because I will have good drugs, and I'll be getting screwed by the doctor for the second time this year :D

Left ankle -- almost 5 months post-op

Seeing the surgeon tomorrow

So tomorrow I go see my ankle surgeon.  It will be almost 5 months since my total ankle replacement surgery and I'm kinda nervous about what he's going to say.  I need to have my other ankle operated on as well and I want him to tell me that he'll do it before the new year.  Come the new year all my medical stuff resets and I will owe my deductible and all that other medical stuff...basically it will cost me a crap-ton more money if I have to wait for the new year.

How's the past 5 months been for my ankle?  Better than my other surgeries!  I actually told my physical therapist today that I think my ankle surgery was easier than my c-sections.  Yeah, it's been more recovery time...but pain-wise, it's been easier.  The first 2 months were the hardest because I was non-weight bearing...which sucked ass.  7 weeks of boring, annoying, frustrating shittiness.  It would take me 2 hours just to shower and get ready...I had to stand on one foot for everything (and that foot has shitty bone in it, so that was awesome).  Had to use the walker to get around everywhere...which took forever...and hurt my hands and elbows (shitty bones there too).  I am so grateful that I can walk on two feet again!

Anyhoo...now that I've started this blog, I should at least have something to do for the next ankle surgery...and I can document it for anyone else who's thinking of having this done.  Blogging will be a better use of my time...better than watching Netflix 24/7...right?

My STAR total ankle replacement.  June 2013.  I even got screwed :)